WEATHER »

Author and Advocate for the Disabled

Rachel Simon to Speak During Hillside House Event


Rachel Simon is the award-winning author of six books and is a nationally recognized public speaker on issues related to diversity and disability. Her titles include best sellers The Story of Beautiful Girl and Riding the Bus with My Sister, both frequent selections of book clubs and school reading programs around the country.

Riding the Bus with My Sister is about Simon’s sister, Beth, who has an intellectual disability and spends all her time riding buses. Beth asked Rachel to accompany her on the buses for a year, and the book chronicles their time together. Set in 1968, The Story of Beautiful Girl is about Lynnie, a young white woman with a developmental disability, and Homan, a deaf African-American man, who are locked away in an institution. They fall in love and escape, finding refuge in the farmhouse of widow named Martha. Lynnie gives birth to a baby girl before the family is separated by the authorities. Homan escapes, but Lynnie is caught and forced back into the institution, and the baby Julia is left to be raised by Martha. The novel details the 40-year journey of the four people.

Rachel Simon
Click to enlarge photo

Courtesy

Rachel Simon

Simon will speak at a Sunset Soirée this weekend hosted by Hillside House, a nonprofit home and learning center for the disabled. Click here for time, location, and other details. The Santa Barbara Independent caught up with Simon by phone this week to talk about her writing and her work on behalf of the disabled.

What was it like growing up with a sister with disabilities, and how has this contributed to your current works? I’ve always really loved my sister and felt proud of her and protective of her. But she is my sister, so that means we see each other at our best and our worst. I see sides of her that other people might not see. I’ve had to wrestle with feelings I wasn’t proud of about how I felt toward her. Riding the Bus with My Sister is a journey not only on the buses but also on my coming to fully accept her as she is, which includes someone who wants to ride buses all the time, and that is not what I wanted for her. But what she wants for her is more important than what I want for her. And I had to learn how to accept that.

My relationship with my sister was the basis for my first best seller. It was the book that kind of put me on the map. And then two books later is the book that I will be speaking about for Hillside House, and that’s The Story of Beautiful Girl. Everybody who attended my talks would come up to me and tell me their stories, and I started to hear about the lives of people who had lived differently than my sister. And in some cases, there were people who put their children in large state-run institutions, and I would learn about what happened to them in these places. I started to think that this is a huge piece of American history that nobody even knows about. Most Americans, when you say institutions, think of places for people with psychiatric issues. They don’t realize there was a whole separate system for people like my sister. And they weren’t kind-hearted, smaller, careful, loving places like Hillside House. They were these huge places with thousands of people who were forgotten, neglected, and underfunded, and where the good staff really struggled to do their job.

I started to think that I needed to write about this, and to write about it in a way that also told the story that people with disabilities can fall in love, can have important friendships, can feel the same sense of longing and hope that all the rest of us feel. Most people you talk to who are in their fifties will tell you there were not many people growing up that were like my sister that many people saw. They were not out in the world, and my sister was. So I wanted to tell that. Because I spent my life being my sister’s translator: I translate the world for her, and I translate her for the world.

What has been your family’s reaction to your literary successes? What are your sister’s thoughts? My family overall is overjoyed because we’ve all felt similarly that my sister deserves to be out in the world and not hidden — we were not raised to feel anything like shame. We were raised to feel that she has the same rights as everyone else, so for me to have some success in a career that really promotes that, I think everybody is very happy about it.

When it comes to Riding the Bus, my sister is extremely happy, and if you met her, she would try to sell you a copy. We have an arrangement where I give her $2 for every book she sells. When the book came out, she actually set up a book-signing for me in the drivers’ room of the bus company, and all the drivers got signed copies of the book.

Has there been any sort of evolution with your relationship with your sister over the years? Have you and your sister always been close or has your relationship changed at all as your success has grown? I’ve always really loved her and protected her and everything, but the experience of Riding The Bus was the biggest transition. It really is a milestone in my relationship with her because it’s very hard to accept that a family member is doing something as eccentric as spending all their time riding city buses, so a lot of anger and judgment had come into me toward her, and it’s very hard to protect someone and take care of them if you’re angry at them and fighting all of the time. Through the time that I spent on the bus with her, I began to learn that this is a civil rights issue, and she had a right to live her life as she chooses. Accepting that has made me stop being angry and instead made me start embracing her life. That was an enormous transition to just see her for who she is instead of getting angry that she isn’t who I wanted her to be.

In the Story of Beautiful Girl, beautiful girl early in the story chooses to stop speaking — which is called selective mutism — for reasons that are explained as having to do with witnessing a trauma. Her devoted staff person — like the great people at Hillside House — realizes that she communicated through artwork rather than verbally, so she draws a series of pictures that explain what’s been going on in her life. That staff person recognizes its what beautiful girl wants. The whole thing of figuring out what a person wants and then honoring it, I think that’s a major thing that a lot of family members initially struggle with. They think, “Oh, how can she make good decisions about what she wants?” And then you think, “Well how do I make decisions about what I want?” If you overly protect somebody, they can never learn, and you infantilize them forever. Even though somebody may need a lot of help, it doesn’t mean that they have no desires and nothing that they want. They may want to watch a train go by at 11 every morning, and that may make them really happy. Or they may want to sit in that patch of sun for two hours every day. I think it’s really important that families honor what people want that makes them happy.

What is the biggest misconception about disabled people? What’s the stigma that you feel they have to deal with the most? People viewing them as something other than human. And I would say that is everything from not worthy of being human, somehow not fully human, to superhuman. If you look through literature, so often people with disabilities were presented that way. You had the blind oracle that tells the future, or people with superpowers who are one step away from God. When I was growing up, one of the things we always heard from people was, “Oh, what a blessing your sister is” and I’m like, “Why is she a blessing more than I’m a blessing or you are? What does that even mean?” I mean it’s just these dumb things people say, or “This child happened because your family sinned or because you didn’t believe in God enough.”

What we need is a society that has proper supports that are properly funded so that everybody has a good life. And that’s really the battle. And my sister doesn’t fight that battle because she just exists in her life, and by just existing in her life, people are forced to confront that this person has a right to sit on the bus, and this person has the right to go shopping and be in the world. And if people don’t think that’s right, they have to question themselves. My sister just lives her life, and I speak out about it, and that’s just the way it works.

What will you be addressing in your upcoming talk at the Sunset Soirée? What will be some of your speaking points? It will be about how dedicated people like the ones we have at Hillside House have helped beautiful girl and have helped people like my sister live more fulfilled lives. The talk will use artwork to illustrate some of the story of beautiful girl and photographs to introduce people to my sister. So it will be a mix of the two books — fiction and nonfiction — to really honor the people who are there and the work that they have done to make lives better.

event calendar sponsored by: